Yes I had the same problem over some time Tulip - initially loss in "clumps". At that stage my Doc found my underactive thyroid which had to be addressed with fairly high dosage until it settled to a lower constant. Hair loss took some time to settle down and now is rare at last. (Thinner though)

I've read (and my doctor confirms) that thyroid tests are hit and miss, and so I'll be starting an experimental dose of dessicated thyroid soon, even though several years ago my thoriod tested "normal". I'm excited to see if it helps, not jsut fo rmy hair but for overall health too.

My hair has lost a lot of thickness since I became ill. I have areas where the hair is so thin it looks like I'm nearly bald, and sometimes when I put my hair up these spots are quite noticeable, so I've learned ways of covering them up with other hair.

About a year before getting very sick, I started losing my hair, too.
I have before and after pictures that show the drastic change. It feels like i'm not the same girl, anymore. It is scary to see me like that.
I understand why people around me never doubted that I was sick.

However, a few months ago, my mom decided to surprise me and bought me a wig (same color and style of hair).
My pictures are as beautiful now as they were before my illness. I look "normal".
I wear it on big occasions.

Thanks! My thyroid is normal according to my gp, but she isn't a very good doctor so I have no idea if it really is. I'm already taking zinc

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According to this, the test used to indicate thyroid function actually doesn't test the thyroid at all, it tests a hormone secreted by the pituitary gland based on the theory that this hormone indicates thyroid status.

The theory does not coincide with knowledgeable doctors' experiences with patients or with the patients themselves. In other words, the best hypothyroid doctors and the healthiest hypothyroid patients are the ones who don't see the test as helpful for either diagnosing hypothyroid or even as an indicator of how much thyroid meds are too much or too little, rather it is when matters are primarily determined by symptoms that the most help is found.

So for me, I tested "normal" several years ago, and I'm not bothering to get tested again before trying this dessicated thyroid that I have been prescribed (there's also info on NOT relying on T4 meds). My doctor has said it will be very obvious to me if I'm getting too much, so the plan is to just play it by ear--if I get relief from some symptoms I'll know I was hypothyroid and need this, if I instead get hyperthyroid symptoms then I'll know to leave my thyroid alone.

All that to say, if the dessicated thyroid helps, then it just might be the answer for my hair too.

This is anecdotal, but every time I do a "campaign" against candida, I get new hair growth. Anyone else?

Sushi

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There's a whole underground thing about using anti-fungal cream to experience increased hair growth, miconazole nitrate is the one most commonly used, Monistat is the name of the one most commonly used, so I don't doubt that managing candida could make a difference in hair growth. Here's an informative website on the topical cream with a helpful video. Turns out not only does it increase hair growth, but it also temporarily suspends shedding while you are applying it, but the effect is lost if you stop.

According to this, the test used to indicate thyroid function actually doesn't test the thyroid at all, it tests a hormone secreted by the pituitary gland based on the theory that this hormone indicates thyroid status.

The theory does not coincide with knowledgeable doctors' experiences with patients or with the patients themselves. In other words, the best hypothyroid doctors and the healthiest hypothyroid patients are the ones who don't see the test as helpful for either diagnosing hypothyroid or even as an indicator of how much thyroid meds are too much or too little, rather it is when matters are primarily determined by symptoms that the most help is found.

So for me, I tested "normal" several years ago, and I'm not bothering to get tested again before trying this dessicated thyroid that I have been prescribed (there's also info on NOT relying on T4 meds). My doctor has said it will be very obvious to me if I'm getting too much, so the plan is to just play it by ear--if I get relief from some symptoms I'll know I was hypothyroid and need this, if I instead get hyperthyroid symptoms then I'll know to leave my thyroid alone.

All that to say, if the dessicated thyroid helps, then it just might be the answer for my hair too.

There's a whole underground thing about using anti-fungal cream to experience increased hair growth, miconazole nitrate is the one most commonly used, Monistat is the name of the one most commonly used, so I don't doubt that managing candida could make a difference in hair growth. Here's an informative website on the topical cream with a helpful video. Turns out not only does it increase hair growth, but it also temporarily suspends shedding while you are applying it, but the effect is lost if you stop.

Thanks! My thyroid is normal according to my gp, but she isn't a very good doctor so I have no idea if it really is. I'm already taking zinc

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Did your gp test for "TSH" only. I would suspect so, as even a lot of endocrinologist still use only TSH levels to diagnose thyroid health. I think testing your free T4, free T3 and initially reverse T3 plus the antibody test should be the minimum test for thyroid. Your cortisol levels need to be at normal levels as cortisol is report to be used in the conversion of T4 to T3 and the ushering of T3 into the cells. Although I think using dessicated thyroid may help with this some since it has T4, T3 and T2,T1 (???) in it. I personally have zero difference between Synthyroid and Armour/Naturethroid, but personally prefer natural thyroid and finacially prefer synthroid (generic). My TSH has been tested while taking both of them and it has never gone below 3.

I have quite a bit of accumulated knowledge on stopping and hopefully reversing hair loss.

Apart from conditions like hypothyroid, the common causes of hair loss are: (1) too high levels of the hormone Di-hydro-testosterone (DHT), and/or (2) high levels of the inflammatory cytokine TNF-alpha.

DHT is the more common cause.

To reduce DHT, you can use supplements like saw palmetto extract, beta sitosterol, biotin.

To reduce TNF-alpha, I believe cat's claw is a good herb for this.

Also, using topical minoxidil on the scalp often works wonders. Don't buy "Regaine" minoxidil, as it is vasty overpriced. Look for some good minoxidil deals online.

You really need to take several of these recommended supps to get a noticeable regrowth of hair (usually within a few months).

This is anecdotal, but every time I do a "campaign" against candida, I get new hair growth. Anyone else?

Sushi

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Hmmm that hasn't happened with me, but I wonder if Biotin is related here?
Biotin is depleted with candida overgrowth. And good bacteria like mutaflor- e-coli nissle, produces biotin in the gut. Biotin status is very much related to hair growth* or loss, and biotin levels are often compromised in CFS.

*Mothers treated with Biotin while pregnant apparently have babies with unusually full heads of hair.

Hi all, regarding TSH the reference range used by laboratories has been scientifically proven to be wrong! They use ranges like 0.4 to 5.0 it should be 0.4 to 2.5 so even if your doctors cheeked your TSH, if your results were between 2.5 and 5.0 theyll tell you its fine when its not! Its estimated about 25 million Americans are having thyroid problems missed because of this, article about it here http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

Another thing to cheek is any medications your on, a lot of them have the side affect of hair loss and most doctors are hopeless at telling patients what side effects they have, if you want to find out if any of the meds your on cause hair loss go to this site you can look up every medication there and it will tell you what the side effects are. http://www.drugs.com/

Another common cause is a lack of certain minerals especially iron, most likely cause of this is celiac disease if you havent been screened for this, you should have been.

Other possibilities that often get missed are Adrenal insufficiency, a lot of doctors even if they think of it, think you can rule this out by testing Cortisol, this is wrong! If anyone hasnt had this done properly it should be done like this.

When adrenal insufficiency is suspected, blood for an AM cortisol level along with an ACTH level and an aldosterone level is drawn. With a normal range of 9-25, mcg/dl, blood cortisol levels higher than 19 generally rule out the possibility of adrenal insufficiency. Levels lower than 3 suggest adrenal insufficiency, and levels between 3-19 are indeterminate. In primary adrenal insufficiency, the blood ACTH level is high. A low cortisol with a high ACTH is sufficient to diagnose primary adrenal insufficiency; a low ACTH with a low cortisol level is seen in secondary adrenal insufficiency. Further tests can be used to differentiate pituitary from hypothalamic causes in secondary conditions.
Regardless of the cortisol level, if adrenal insufficiency is highly suspect, an ACTH stimulation test is performed. In this test the patient is given an injection containing cosyntropin, a synthetic form of ACTH. Cortisol levels are tested prior to administering the drug and at 30 and 60 minutes after the ACTH is given. In adrenal insufficiency the rise is blood cortisol levels is negligible. A longer version of the test can be used to determine if abnormal results are due to pituitary or adrenal disease. Full article here http://www.suite101.com/content/adrenalinsufficiency-a1543

Hemochromatosis is another possibility its tested for by doing complete iron studies this has to include Transferrin saturation a lot of doctors only test ferritin which can lead to the diagnosis being missed, If any of the iron results come back high then hemochromatosis is very likely, If they come back low then celiac or other malabsortion syndromes are likely.

All of these things should be done before anyone gets a CFS diagnosis, but I know the reality is that they frequently arent checked for so I thought Id write them out in case anyone here hasnt had them done.

I was googling biotin and it has great reviews about hair growth, but also a lot of people have reported bad acne outbreaks on it and migraines. Has anyone had problems with this?. I already have zits from the ME and don't want anymore! :worried: I might put myself on iron tablets as I suspect i'm low again.

I was googling biotin and it has great reviews about hair growth, but also a lot of people have reported bad acne outbreaks on it and migraines. Has anyone had problems with this?. I already have zits from the ME and don't want anymore! :worried: I might put myself on iron tablets as I suspect i'm low again.

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Saw palmetto or beta sitosterol will probably work better than biotin. Biotin can lower DHT, but only when there is vitamin B3 and zinc present.

Beta sitosterol, a plant sterol, also improves the Th2 to Th1 balance, in favor of Th1, as is considered beneficial in CFS.

Incidentally, high DHT can cause irritability symptoms. Irritability is something I often get, and I hate it, as you find yourself getting annoyed with anything that moves or makes a sound.

(DHT is not the only cause of irritability; it can also be cause by: acidosis, lactate build-up in muscles, high IL-10, high TNF-alpha, increased tryptophan catabolism, hypothyroidism, low iodine, high prolactin.)